Thursday - The Detailed Version :)

Rob has taken the time to give a quick update on what has happened with our much anticipated visit to Toronto on Thursday. We all know how long winded I can get, (more for my own benefit in the future, then for everyone else to know all the details), so some of what I will have to say will be a repeat of Rob’s update.

Wednesday night I went home for a lovely sleep in my own bed, at that time thinking we would be coming home for good Friday … little did I know it would be the last time I would see home and my bed for some time.

Thursday morning I had to be up and back at the hospital early for an OB appointment … the third one since our admission to Mac, been rather handy being so close … as I am quickly finding out now that I am further away. As is usual for this time of my pregnancy I was measuring small for my dates and so I will need an ultrasound done next week. With two of my pregnancies this has been due to placenta insufficiency, showing up around 36 weeks, one other pregnancy it was questionable but I went into labour before they ever got around to an ultrasound, and with one pregnancy I did not even make it this far before placenta insufficiency and severe toxemia appeared. At the same time I have been experiencing some higher blood pressure measurements, although not consistently and not in the concerning levels yet … just higher then normal for me. So we know there is a concern and pray that at this time it is just because I carry small and stress has created these higher levels … relax Steph :)

After my appointment I went to find James and Rob. James was getting ready to go and was very excited to go in the van, but yet seemed more mellow and different then normal. His SAT levels were low, dropping into the 80’s. We worked with several different probes and positions until we got it to read low 90’s, they charted that amount and then we got ready to go. We realized upon leaving that James was not James. He was SATing low for daytime, his personality was not himself, he didn’t even want to go walking or play in the child-height sink in the family bathroom (a place he’d love to hang out for hours if mom let him) … definitely something was off. But at the same time, we desperately wanted to get to Toronto, and knowing that we could get oxygen and all the help we needed there we proceed to go.

We did not put his monitor on during the ride over, but he was very quiet, not even pointing out the trucks. Upon arriving we found his SATs in the mid 80’s and not picking up. We registered and then went for x-rays, when we arrived back at the clinic he was SATing low 80’s sometimes even 70’s with his heart rate up between 170-190 (normal is between 70-110), plus he had a fever (something we have not seen since his admission in May). We asked at the desk if they had a spot checking machine that we could check how accurate our machine was. From there we were brought in and checked and their machine was saying the same as ours. He was moved to a room with oxygen and quickly started on 1.5 L (normally he only requires 100 ml). He had not required this much oxygen since his weaning days afer coming out of PICU.

So that is how James was introduced to the Resident. He went from plain miserable to falling asleep on my lap while they examined him … definitely not James. The lack of oxygen had exhausted him. By time the resident went through everything the oxygen had helped enough that James woke again and played quietly, but still very mellow for James.

The doctor arrived and without hesitation told us she believed James has PAP (Pulmonary Alveolar Proteinosis). She said all evidence – symptoms, CT Scan and bronchoscopy results – point to this. The reason the bronchoscopy results were not conclusive was because they claimed the substance removed from James lungs was not the classic appearance of PAP. She spoke to our Lung Specialist before seeing us and he told her it was a milky substance, which is exactly what PAP looks like. She said she didn’t know why they said it wasn’t classic appearance but she didn’t know of anything else that appears like this. (As a side note, we brought the records and information with us from Mac, before leaving Mac we took the time to photocopy the written information and had already read exactly what she told us – the stains were positive except it didn’t look classic … which already frustrated us … knowing that the results had been positive and it was only the look that made it inconclusive and yet our Lung Specialist had insisted it was not PAP but Aspiration Pneumonia.) Our “new” Lung Specialist proceed to outline our treatment options, advising that they were arranging for a bed for James as he was in no condition to go back. She did say that treatment could be done in Hamilton, and she had already spoken to our “old” Lung Specialist who said he was willing to do it … but we’ve been there long enough and know him well enough that there was no way we were going back, we struggled to get here and here we were staying.

Our visit with the actual Lung Specialist was not very long, we had already taken a couple hours of their time and were going to be checked in so more details and questions could be answered later. She made sure she went over the basics and explain our treatment options and then proceed with her clinic appointments and left the rest to her staff to get us set up in a room, which actually did not take very long.

Thursday brought some emotional up and downs. We’ve got what we wanted … a visit to Sick Kids, a second opinion, clearer answers. The hard part comes once again when we thought we were at the end the road and here we’re only at the beginning again. The realization of how much time was “wasted” (not all, but lots) at Mac … and the frustration of the fact that if they had just listened when we first asked to come here we could have been a whole lot further a whole lot faster. But we can’t undo the past and so we must deal with the future. It was a day where I found out that I will only have 4 more weeks before a new arrival in the family due to them deciding another c-section is necessary (I was actually hoping to go overdue for once, although not really expecting it)… and at the same time finding our son in a hospital further from home for a minimum of one week possibly weeks. How I miss home and the girls and just the regular ups and downs of everyday life. I am thankful the girls are handling things so well, but how much longer can they carry on not really having a home?? And when they finally arrive home will anything be the same?